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About LGS
Types of Seizures
Treatments
Living with LGS
What to Expect
Caregiving
Quality of Life
Services
Education
Community Forum
Donate
Resources
Media
Events
Stories
Quality of life issues change each day when living with Lennox-Gastaut syndrome. It is
typical for families to prepare themselves for the unexpected while trying to provide the
best quality of life for their child.
The high frequency of seizures can take affect a patient's quality of life. Children are often
required to wear a helmet due to the frequency of atonic seizures. Behavior problems are
a typical characteristic of LGS and can take a toll on the entire family. The side effects of
many anti-epileptic drugs can also reduce the quality of life for a person with LGS.
Individuals with Lennox-Gastaut syndrome are restricted from participating in certain
activities such as some physical sports, driving, and various forms of employment.
Changes in living quarters to accommodate the needs of a person with LGS are common.
If an individual is wheelchair bound, an entire house or apartment may need to be
remodeled for better accessibility. Shower bars and other equipment are often added in
bathrooms to assist the individual. These improvements may be expensive, often leading
to additional financial stress for a family.
For the child who is constantly having seizure activity, attending school on a regular basis
is usually rare. In a recent survey conducted by the LGS Foundation, nearly 50% of
school-age children no longer attend school due to uncontrolled seizures or behavior
problems, while 21% of those surveyed miss school 50% or more of the time. Day care for
a child with disabilities can be very hard to find. Some parents may rely on another family
member to help care for their child, but this is not always possible. Therefore, parents
must be available to care for their children, usually resulting in dramatic changes in a
family's financial situation or structure. In a two-parent household, one parent may work to
earn the medical benefits while the other parent stays home to care for the child. In a
single-parent household, it can be extremely difficult to provide constant care for the child
with LGS while managing to provide for them financially.
As the child with LGS gets older, parents begin to realize the need to plan for their child’s
future. Group homes and adult day habitation programs often become a reality. These
decisions can be overwhelming. However, these programs are intended to encourage
independent or assisted living based on the individual's likes and needs. Group homes
are no longer institutions. Instead, they are comfortable homes staffed by qualified
people. It can be a very difficult decision, but parents need to be aware of the options
available for the child's future.
The quality of life for each individual with LGS varies, but many patients share similar
experiences, as do their families.
typical for families to prepare themselves for the unexpected while trying to provide the
best quality of life for their child.
The high frequency of seizures can take affect a patient's quality of life. Children are often
required to wear a helmet due to the frequency of atonic seizures. Behavior problems are
a typical characteristic of LGS and can take a toll on the entire family. The side effects of
many anti-epileptic drugs can also reduce the quality of life for a person with LGS.
Individuals with Lennox-Gastaut syndrome are restricted from participating in certain
activities such as some physical sports, driving, and various forms of employment.
Changes in living quarters to accommodate the needs of a person with LGS are common.
If an individual is wheelchair bound, an entire house or apartment may need to be
remodeled for better accessibility. Shower bars and other equipment are often added in
bathrooms to assist the individual. These improvements may be expensive, often leading
to additional financial stress for a family.
For the child who is constantly having seizure activity, attending school on a regular basis
is usually rare. In a recent survey conducted by the LGS Foundation, nearly 50% of
school-age children no longer attend school due to uncontrolled seizures or behavior
problems, while 21% of those surveyed miss school 50% or more of the time. Day care for
a child with disabilities can be very hard to find. Some parents may rely on another family
member to help care for their child, but this is not always possible. Therefore, parents
must be available to care for their children, usually resulting in dramatic changes in a
family's financial situation or structure. In a two-parent household, one parent may work to
earn the medical benefits while the other parent stays home to care for the child. In a
single-parent household, it can be extremely difficult to provide constant care for the child
with LGS while managing to provide for them financially.
As the child with LGS gets older, parents begin to realize the need to plan for their child’s
future. Group homes and adult day habitation programs often become a reality. These
decisions can be overwhelming. However, these programs are intended to encourage
independent or assisted living based on the individual's likes and needs. Group homes
are no longer institutions. Instead, they are comfortable homes staffed by qualified
people. It can be a very difficult decision, but parents need to be aware of the options
available for the child's future.
The quality of life for each individual with LGS varies, but many patients share similar
experiences, as do their families.